Category: Notes to Mary

 

Hi, Dad-Dee is how she always energetically started all her calls.  That July 2017 day it was immediately followed by, I need to come to see you.

You are in a wheelchair and on oxygen, I contested. Honey, I will be on a plane tomorrow.

No, she countered. I am coming to see you there at the lake.

End of discussion. The tone in her voice told me only that she had a commitment that was not to be challenged. I could tell then that she was driven by some powerful force of purpose and was not going to be swayed. I had no idea that eight days later she would take her last breath while cradled in my arms. She was coming to be with her daddy to make the transition from this world and somehow knew it.

We both had known that this time would come, the passing of my only child from a sinister debilitating disease, Cystic Fibrosis (CF). When Mary was diagnosed at 18 months, the life expectancy was twenty-one. She was in her thirty-fourth year at the time she chose to make her transition from this life. By now her life expectancy was about the average for an adult with Cystic Fibrosis.

Just prior to Mother’s Day 2017, I sent a short email. I simply said I am in your corner, no matter what.

Her response was emotional. “I hope there is still time to repair our relationship. I miss you.” She shared with me a book she was reading by Brene Brown. I immediately purchased and read it and we compared passages that impacted our lives over the next couple of weeks by email and phone. Reaching her by cell was hit and miss as she was sleeping over seventeen hours out of twenty-four.

The diagnosis had taken its toll on her body. She most often responded in the last two years when asked how she was doing with two replies. “When you can’t breathe, nothing else much matters, was one response and, “Next question.” was the other.

She arrived at the airport on Jul 16, 2017, in a wheelchair and an oxygen generator attached. As always, when she saw me, she shook her handwave and called out hi, Daddy. How grateful I am that those moments were caught on video for all time. Mary was very excited as usual as she ignored her condition. As we approached the parked car, she insisted that I open her luggage to show me two paintings she had brought as gifts. One she had painted of ocean shoreline with a heart etched in the sand. The second a painting granddaughter Clara had painted at a summer camp with handprints around a sun. In addition, a framed picture of her and Clara, which now sits on my nightstand.

Once we got her settled in the lake house master bedroom things began to happen so fast. Mary’s only requests were that she not be left alone and that she was not in pain. The love of my life, also named Mary, was a tower of strength and vital resource for what was to come over the next week.

My daughter had been given morphine for pain in low dosages that left her in agony most of the time. On a pain scale of 1-10, she would always respond 9-10. My LOML researched and located a compassionate hospice foundation. Within hours they assessed Mary’s condition, verified her organs were shutting down, bathed her, ordered morphine as needed to control the pain, and stayed in touch every four hours.

With Mary relatively comfortable, during her waking time, we talked about how she had planned her funeral and written her eulogy, along with her hopes and her fears. I try to remember all the comments she made over those days. She was propped up with pillows to help her breathe on a king-sized bed. Either LOML Mary or I was beside her twenty-four hours a day. She drifted in and out of consciousness. I read stories to her and showed her the website I had set up in her name to leave a legacy for her Clara to enjoy all the pictures and videos we uploaded. We agreed to start a foundation in her name to support hospice facilities to other CF sufferers. Mary confided in me repeatedly that she wanted to be remembered for making the world a better place because she had been here.

Somewhere in the first few days, Mary confided that she wanted to have a special book read at her funeral celebration, Dr. Seuss’s Oh the places you’ll go! I downloaded the book from Kindle and read it out loud to her numerous times of the days. Many times she was asleep, but I read on so she could hear my voice and know I was nearby.

I play this song I wrote for Mary often, especially today as I bawl out loud.